2nd Birthday

We have been enjoying our time together that we forgot about our blog! Elijah is getting stronger and has fewer restrictions so we have been able to experience many new and exciting events the past few months. We celebrated Elijah's 2nd birthday on April 25th, we were able to take him to the zoo and down to Milwaukee to visit family for a 4th of July picnic. We will continue to share his developement, our thoughts, and latest happenings. More to come...

Our First Christmas......at Home!!!

We have been very blessed with the continued health and improvement of Elijah over the last year. The trips that we have made down to Children's Hospital have been for minor issues and should be the case from here on out.

We made a calender for our family as our Christmas present to them....I do have to say it, it turned out really, really good!

http://share.shutterfly.com/action/welcome?sid=0AaN2bZu3cuGLjw

This year is the first Christmas at home for Elijah. He loves the sound paper makes when you rip it, and he was giggling away as we opened up his presents for him. Of course both sets of Grandparents spoiled with the amount of Christmas presents he recieved...but that is to be expected. We are now looking forward to bringing in the New Year at home....all happy and healthy!

I got inked!

My older brother came home last month to visit and we went and got tatted....crazy, huh!

I got the symbol for STRENGTH ( I chose red because it also represents strength) with Elijah's name over it. It is over my heart....to always remind me of the strength he has and will continue to show us!

Say What!?!

On December 9th we headed down to Children's Hospital bright and early for Elijah's hearing test/stint removal, as you can see he is looking stylish in his Spongebob pj's (courtesy of Grandma). His stint removal was very routine...in with the scope and out with the plastic stint in less than an hour. The hearing test took a little longer to conduct. The outcome of the hearing test stated that he had minor hearing loss in both ears and will need to get hearing aids for both ears. We are hoping that once he gets the hearing aids and gets accustomed to wearing them (the doctors said it usually takes about 2 months for kids to get used to them) that it will help with his attention span and speech development.

Elijah also has been working with a Physical Therapist for the last couple of months on a weekly basis. He is making great improvements and we definitely can tell how much stronger he has become. The PT has decided that he will need to get some ankle braces to help support his ankles and make him keep his feet flat on the ground. This also should help with his standing exercises and getting him to learn how to stand up and eventually walk.

Zipper Club

On this day last year, Elijah had open heart surgery and became a member of the zipper club(named for the scar on the chest that resembles a zipper).

It is hard to believe how much he has been through, and what strength he has. This time last year we spent our holidays at Childrens Hospital and now we are very thankful that we get to be in the comforts of our own home, with our little boy! His strength has taught us a lot and we are so proud of all that he has and will accomplish.

Kidney issue....all fixed...we hope!!

Well, it has definately been a while since we had to spend time in a hospital. We were down at Children's in Milwaukee for Elijah's kidney procedure. We went down on Wednesday morning to have him admitted for pre-op lab work and just general observation before his procedure Thursday morning. Steve and I definately had a hard time trying to keep Elijah ocuppied while confined in a hospital room. Now that he is more mobile it was difficult to keep him still, the minute we put him in his crib he just wanted to roll around. We had to put some blankets on the floor and barricade with pillows because while in his crib he kept bagging his head against it. It was funny to see some of the specialist and nurses check his vitals while crawling on the floor with him.


Thursday morning they took him down to surgery holding around 8am. They told us that were going to have to take a series of x-rays of his ureter tube and then determine what they were going to do. The x-ray showed that there was 2 blockages. The good news was that they were able to do the procedure scopically, so they did not have to re-cut him. One of the blockages was up higher on the ureter tube and they had to use a balloon to loosen up the blockage since it was slightly bigger than the other. They wound up leaving a stint in which will eventually have to come out. They decided to send him to the ICU unit for recovery, just because of his past medical history. After 24 hours, they decided to transfer him to a normal recovery unit becuase he was doing so well. We only had to stay until about noon on Saturday.

We are going back down in 4 weeks for a Renal Ultrasound and then 4 weeks after that we are going to have the stint removed.

Continuous Progress

Elijah has been doing great! He has been off the oxygen during the day for over a month. This is a step in the right direction from his heart surgery. By having the hole repaired in his heart, his oxygen levels are more stable and where they need to be. The doctors were so encouraged they were willing to take away the oxygen machine altogether! Michelle and I weren't that ready to just cut it out cold turkey.

He does dip at times when he gets into a heavy sleep, so we choose to continue to use it just at night. We are being patient with it because he's had the hole in the heart for almost a year, so our thought is that it will take all that time to get stronger and regulate itself.

Elijah has so much more energy when he is awake which is awesome to see...and he's got a smile that will make you melt. Somewhere along the way he has developed this laugh that is staight off the "Revenge of the Nerds" movie...must be from Michelle!

Thanks for checking in on us, talk to you soon.

1st BIRTHDAY!

Hard to believe its already been 1 year...April 25th. We hope and pray that the previous 6 months you were in the hospital will be your last. You have been through a life time of events in such a sort time period. You have left doctors mesmerized, nurses heart broken, and mom and dad absolutely delighted to have you home!!

We missed a lot of time together, but we love every second with you. The smile on your face in the morning gives us that extra boost when we wake up and gets us through the day. We have no idea what life has in store for us, but after what we have been through we'll be able to handle it because we are all together now.

Happy Birthday...we love ya,

Mom, Dad & Lucy

BREAK OUT

This is a favorite of ours...Elijah has had enough of the hospital and is looking to breakout of his crib!

BACK HOME

Elijah was back home on Thursday, March 18th. He had a 2 week stay at Children's Hospital, this time cleaning out an infection he got from his heart surgery. It had been 3 months since his heart surgery, and such a long time before his infection to show.

We had noticed his chest scar becoming red and swollen, but after a couple of days puss pockets began to form on the surface. He already had some follow up appointments scheduled at Children's Hospital the week this took place, so it worked out the best possible way. The doctors looked at it and got him into day surgery right away.

Sadly, the doctors had to reopen Elijah's chest cavity to be completely confident they got rid of the infection. Amazingly, the kid was himself a day or two after surgery. We do have to give him antibiotic treatments for the next month at home to make sure the infection is gone. Its another step, but its better to do this and have him home than for him to be at the hospital.

Hard to believe, on the 25th Elijah will be 11 months old...1 month away from his 1st birthday!

Scar Infection

Over this past week the scar from Elijah's heart surgery started to swell up and become infected. He is 3 months removed from his heart surgery so the timing of this is strange. Doctors have told us this could have been brewing for a while and just found its way to the surface now. Elijah never ran a fever and it never seemed to bother him, unless you poked at it.

Seeing that we were already at Children's Hospital we had a doctor look at Elijah's scar. To the doctors credit they had shuffled around the schedules to get Elijah in to take some further tests and x-rays. The conclusion to all this was they wanted to get him into day surgery and take care of the infection.

During about an hour in surgery, the doctors decided to open his chest cavity to make sure they clean out as much of the infected area as possible. As frustrating as it was to hear this, it was the best posssible way to treat it. Elijah is doing great and resting comfortably. We were told he would be here for about a week.

The timing, as strange as it seems, worked out best because we would have needed to come back to Children's. We wouldn't have been able to get the care and treatment needed for this is Green Bay. Michelle and I are doing fine. Its frustrating, but it needed to get done. We are hoping for a speedy recovery, and can't wait to get everyone back home...again!

SLEEP STUDY

Elijah's sleep study went well. If you're not familiar with sleep studies, you can see in the picture all the stuff he was hooked up too. There is a team of nurses that monitor his sleep patterns throughout the night on a monitor and always recording his breathing, heart rate, and brain waves.

Elijah managed to sleep through the night so the sleep lab will have enough information for their report. They did have Elijah on just room air which we were told he did fine on. This test will help the doctors to determine if we are able to get rid of his oxygen...even though he is only on 1/2 liter.

Although Elijah seemed comfortable during the test, it was a different story for Michelle and I. We were crammed in a 12 x 12 room, but at least we could all be together. Originally we were told only one parent could stay overnight, while the other would be forced to a hotel.

While Elijah did great in the sleep study, Michelle and I did great with our NO sleep study of our own!

SLEEP STUDY

At the end of the week we are off to Milwaukee once again. This time Elijah will be having a sleep study done. Towards the end of his last stay at Children's, the nurses had noticed that he O2 levels would dip when he fell into a deep sleep. The doctors had ordered a sleep study to be performed as an out patient once he had recovered from his surgery and was off the majority of his medications.

That will be done Thursday night, and then on Friday he has a Echo of his heart. This will be the first follow up with any kind of x-ray images. This is a scheduled follow up to make sure everything is looking like its suppose too in there! After that, he will have a renal ultrasound of his kidneys. Again, this is the first follow up having pictures taken of his kidneys since his surgery.

It sounds like a lot, but the x-rays are done when Elijah is sedated. We wanted to maximize our time in Milwaukee, otherwise all the doctors down there want us to come back at different times which makes it difficult to get all that time off work.

Aside from the teething, Elijah is doing great!

GETTIN' BIG

We have been slacking a little with keeping this blog updated, sorry about that. Elijah is a few days away from being 10 months old (25th). He is doing so good for being home a little more than a month. We know kids grow up fast, but Elijah is getting bigger and stronger by the day.

With him being in the hospital for 5 months of his life his development skills are coming along. He is gaining a great deal of neck strength to hold up his big ol' head! He really likes sitting up and who wouldn't after spending as much time has he has in a bed on his back.

We are slowly introducing baby food to his diet. His reactions are priceless because this is the first time he has experienced any flavor in his mouth. He is cutting a bottom lower tooth, but we haven't had to deal with too much in terms of teething issues. His sleeping patterns are tremendous. Normally Elijah will start falling asleep around 8-9 pm and sleep through the night. He gets crabby in the morning when we have to wake him for his 6 am feed, but falls right back to sleep until around 9-9:30 am.

Michelle and I are both back to working full-time. We have a home health nurse that watches Elijah, and Lucy, during the day. Without them one of us would be forced to stay home. With everything Elijah has been through our doctor, and us, aren't comfortable with a traditional daycare center.

All in all our family is beginning to get back to our "normal". Its been a long time coming, but we truly appreciate the time we spend together.

BACK HOME...RESTING PEACEFULLY

On Sunday, January 3rd, Elijah was discharged from the hospital. It has been a long 2.5 months to say the least. He did have to come home on some oxygen, and plenty of meds, as his heart, chest, and everything around it heals and learns to relax!

I know all parents gush about their children, and rightfully so, but when we say Elijah is an absolute miracle we quickly remind ourselves of everything he has been through...better yet, fought through! At discharge, one of the doctors left in amazement as we reviewed his situation and just chuckled and said "Elijah...you are some kind of miracle"!

He is a little over 8 months old, and he has gone through more than you and I could ever imagine in a lifetime! Most recently his heart surgery, but his battle with H1N1 when we almost lost him, his kidney surgery, and his pyloric stenosis surgery.

Elijah has spent his fair share to time at the hospital and it is so good to have him home, everything just seems more complete. We know we will have our hands full, but what kid doesn't do that to their parents?! Through this whole experience we have learned a lot about perseverance from a baby, we have learned to appreciate each and every moment for what it is, and nothing is guaranteed so make the most of it.

We still plan on using this blog to update all of our friends and family on our latest happenings, so we hope you continue to check in on us from time to time. We truly appreciate all of your support, gifts, prayers, and kind words. They all have helped us get through these trying times. Cheers to a healthy, happy, and productive 2010! Take care

THE CHRISTMAS GIGGLE

Our first Christmas together wasn't what we had in mind, but the important thing was we were able to spend it together. At first we were worried about the weather and the affect it may have on our travels in making it to Milwaukee. However, Christmas day, was rainy and warm enough to make it down without any delays or issues.

Elijah is recovering nicely. The doctors are encouraged with where he is at so far. He is a week and a half from his surgery and he is ready to get out of his bed! In the picture above you can see a little of his scar on his chest from his surgery. He is chatting it up more and more and his overall alertness improves each day. We even heard a few giggles for the 1st time on Christmas day, that was an awesome present!

The plan moving forward is to continue weening him off the sedation medications, he does experience some withdrawal symptoms. Also, to get his feeds back to the volume he was at when he came to the hospital, or more, and continue to monitor his progress and make sure everything in and around his heart is doing what it is suppose to. The doctors think a realistic discharge will be sometime around the 1st of the year, which would be a great start to a New Year and great way to close the book on a forgettable 2009!

We hope everyone had a Merry Christmas and a wonderful Holiday season. Thank you so much again for everyone checking in us, your prayers, support, and constant encouragement! We'll keep you posted!

RECOVERING

Elijah is in Day 3 of his recovery and the doctors are pretty happy with where he is at. The challenge for them is to make sure he stays comfortable but ween him off the sedation medications so Elijah starts breathing more on his own instead of the machines he is on.

It was great to spend time with him before his surgery. We were able to hold him, chat it up with him, he would flail his arms, kick his legs, and have all kinds of baby chatter! Its frustrating now when we go into his room and see him just laying there and we can't hold him...but he has responded when he heard our voices, that was cool to see.

Either way Elijah will be at Children's Hosptial for a couple of weeks, but each day so far has been small steps in the right direction for his recovery. Michelle and I have been in Milwaukee all week, but Michelle has to go back to work next week so that will be tough on her. It's a short work week, so we will be back down to spend Christmas with him.

From our family to yours, have a wonderful Christmas and a happy New Year!

HEART SURGERY

Today Elijah had his heart surgery. This was the procedure to close the hole in his heart that causes his oxygen levels to dip and his lungs do not get oxygenated. He was suppose to have this done 2 months ago but he got sick with the H1N1. After talking to his doctor everything went according to plan. His recovery period all depends on how he responds to the surgery. We are expecting he will be at Children's Hospital another couple of weeks.

The next couple of days are critical to his recovery. The important piece of his recovery is for his pulmonary hypertension to regulate so his lungs stay oxygenated. Elijah has been at Children's Hospital long enough that the doctors are confident in how to manage his recovery because of the time they had to spend with him!

We keep hearing how Elijah is fast becoming a favorite among the nurses! Thank you again for your prayers, support and checking in on us. We'll keep you posted.

A very thankful Thanksgiving

This Thanksgiving Michelle and I have even more to be thankful for. Elijah had his breathing tube taken out of his nose and he is currently on a nose cannula for his oxygen, similar to what he had at home.

When we got down to Milwaukee this weekend to see Elijah, we finally got to see him awake! His eyes were open, his arms flailing, his legs kicking. It was awesome to see! For almost two months he had a breathing tube in to help him with his breathing, hooked up to all kinds of IVs, cords, wires and machines, which was pretty intimidating being in his room. Now he is slowly being taken off those same IVs and machines as he is getting back to functioning more and more on his own. It is so great to see him up and alert...for the record he is not a fan of Sponge Bob and was calmed by the football game that was on...football good, Sponge Bob, not so much...I know my son!

He has one last major hurdle left and that's his heart surgery. Assuming Elijah continues on the path he is on, that will take place in the next couple of weeks. We hope to have him home in time for our 1st Christmas together, but if we have to celebrate in Milwaukee then so be it, that's what we'll do.

Friends, family, co-workers, and even strangers always ask, or make the comment, "I wish there was something we could do"...there actually is. During the holiday season we deal with the "hustle" of many organizations looking to raise money for their cause. The next time you see a Children's Hospital collection area drop in a $1 or $.50, or whatever you can, this is an absolutely incredible facility with so many talented doctors and nurses. Without this facility who knows where we would be...and not just our family. Walking through the halls of the hospital there are so many kids of all ages and families that rely on this place to get their loved ones back to health so they can go home.

So, the next time you walk past a Children's Hospital donation area, drop in whatever you can because getting him the care and having this facility in Milwaukee is doing more than we can ever ask in helping us out.

You have no idea of how thankful we are for the progess Elijah has made and to have you in our lives. We truly appreciate the continued prayers and support. Have a wonderful Holiday season, we will keep you posted.

Elijah is doing great!

This was the best visit so far. Elijah's numbers are consistently strong. His oxygen levels are consistently high and he is coming off his sedation medication and is getting closer to the oxygen levels he was at while at home. He is up a more and more, he is kicking his legs and trying to move his arms, but the nurses have to keep his arms pinned to his bed sheet so he doesn't mess with his breathing tube and IV's!

The plan the next couple of weeks for Elijah is to continue to get healthier. He will have all of next week to continue on his progression. The following week sounded like he will have his cardiac cath so the doctors can get a good look at his heart and make sure they aren't missing anything in preparation for his heart surgery. Depending on how Elijah is doing, and scheduling, his heart surgery would follow.

Elijah won't be coming home before his heart surgery because we don't want to run the risk of him getting sick again before his surgery. Also, it becomes hard to get back into a schedule and then have to head back to the hospital. This way when he comes home he will be in the best possible condition he can be in....and we can't wait!! We hope that he is home before Christmas, but after going through all this we have learned to just deal with what's in front of us. If that means we spend Christmas at Children's Hospital than so be it, as long as we are all together we'll make the best of it!

We want to thank everyone again for your thoughts, prayers, and support. The phone calls, the e-mails, the cards, and a special thanks to those that have taken the time to make food for us...it is a great help and very much appreciated! Have a wonderful Thanksgiving weekend if we don't talk before. We will keep you posted, take care.